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View Diary: A little scared tonight.... (76 comments)

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  •  I have a rare adrenal disorder (35+ / 0-)


    that causes high blood pressure. IN my case there is a definitive test for it and treatment that keeps me mostly stable.  I take spironolactone (among other things), and fortunately for me it is a wonder drug that has a specific benefit for my enzyme deficiency.  But considering it is a straightforward condition with an infallible test that has been on the books for decades, it took me many years to a) find out what it was and b) get treatment.  Sadly, the profession of endocrinology is not at the level of other medical specialties - and it should.  Keep looking for your answers. I had to fire 5 endocrinologists before I got one who would even perform and confirm my tests.  Sometimes, that' s just what you've got to do.

    I am sure you probably have been told that short bouts of very high blood pressure are generally not dangerous; not much of a help when you lose consciousness or have terrible panic symptoms (I've peaked out at ridiculous BP's as well before I was controlled), so I am hopeful that you aren't at too much risk while you keep trying to find your answers.

    "Kossacks are held to a higher standard. Like Hebrew National hot dogs." - blueaardvark

    by louisev on Tue Jan 29, 2013 at 06:26:17 PM PST

    •  I'm on spiro, too! (19+ / 0-)

      Maybe the dosage isn't high enough. I'm on 25 mg 2x a day.

      Just out of curiosity...what's the disorder called? It might help.

      "Train yourself to let go of everything you fear to lose." ―Yoda to Anakin Skywalker

      by Auntie Neo Kawn on Tue Jan 29, 2013 at 06:30:31 PM PST

      [ Parent ]

      •  congenital adrenal hyperplasia (26+ / 0-)


        but wait! there's more: congenital adrenal hyperplasia due to 11-beta hydroxylase deficiency.  Its incidence is about 1 in 5 million or so, they think.

        There are two manifestations of this condition: one is the 'classical' which is easily spotted at birth in females due to mixed or masculinized genitalia, and a less 'severe' form which leaves the external genitals largely normal but can still cause abnormalities internally.  What does this have to do with blood pressure?  because it is an enzyme deficiency (11 beta hydroxylase) which blocks more than one kind of hormone, and overproduces other hormones: what they theorized in your case was that you were deficient in aldosterone, and spironolactone will influence the level of aldosterone in your adrenal glands.  IF you are still taking spironolactone, then they must have some lab value that says your aldosterone is low, or your potassium is low.  Mine is almost nonexistent; but I can still make other hormones that make up for it.

        I take 100 mg per day of spironolactone, and this helps keep me from losing potassium.  As potassium goes down, sodium and other mineral-like hormones cause blood pressure to increase.  In normal people, this balance is kept by a feedback mechanism in the pituitary gland that works with the adrenal gland and tells the body how much fluid to hold on to, what pressure to keep the blood, what level of sodium, and the other mineral hormones that keep our circulation normal.

        They have probably suggested a low salt diet as well - keeping salt intake low will also stimulate aldosterone production.

        Hope that wasn't too much detail!

        "Kossacks are held to a higher standard. Like Hebrew National hot dogs." - blueaardvark

        by louisev on Tue Jan 29, 2013 at 06:38:30 PM PST

        [ Parent ]

        •  No, I totally get it, louisev! (25+ / 0-)

          My aldosterone-renin ratio was really, really high in all of my blood work, which is why they were thinking Conn's. In addition, my potassium was low enough that they put me on a supplement. My left adrenal showed some slight evidence of hyperplasia, but then they did the saline suppression test my aldosterone level dropped (they'd previously been in the high 20s/low 30s...after the test it was like 5).

          As a perimenopausal woman, spiro sucks. But if they need to bring the dosage higher I'm ready. It's better than being a basket case. And my potassium looks really good for a change.

          Oh, thank you! I so don't feel as alone in this!

          "Train yourself to let go of everything you fear to lose." ―Yoda to Anakin Skywalker

          by Auntie Neo Kawn on Tue Jan 29, 2013 at 06:48:44 PM PST

          [ Parent ]

          •  no worries (10+ / 0-)

            I don't understand how they tested you for hyperplasia, but then again I only really know basic adrenal chemistry and CAH.  With 11-beta, renin level is low (in my case quite low), sodium is high, chloride can be high, potassium of course low, BP is high (due to sodium) and aldosterone is low.  My aldosterone when first measured during this process, was .2   But as I say, that isn't death-dealing in my case, but it is diagnostic for my particular form of hyperplasia.

            I am curious: what does spironolactone do to you? I have no side effects (not surprising since I have no reproductive organs functional) but I'd be curious to know.  I didn't know there were side effects.

            "Kossacks are held to a higher standard. Like Hebrew National hot dogs." - blueaardvark

            by louisev on Tue Jan 29, 2013 at 07:02:25 PM PST

            [ Parent ]

            •  Mine is a bit different (12+ / 0-)

              So my renin levels have been mostly below 1 (0.2 was one of the lower numbers). My aldosterone ranges from 20-30, and my K was in the low 3's. My sodium excretion was also low, but mostly because I'm not a big salt person. The hyperplasia was via MRI....my left adrenal showed some thickening. But we never got to the selection venous sampling because my aldosterone levels crashed during the saline suppression (two NaCL bags via IV in four hours).

              Spiro makes everything about being a woman more difficult. Swollen, painful breasts, more painful menstruation, etc.

              "Train yourself to let go of everything you fear to lose." ―Yoda to Anakin Skywalker

              by Auntie Neo Kawn on Tue Jan 29, 2013 at 07:12:18 PM PST

              [ Parent ]

              •  ah, i see (8+ / 0-)


                thanks for explaining. I am so used to the clinical diagnosis of hyperplasia I forgot that it produces a large adrenal gland too! :)   those of us with CAH tend to think of the condition as "adrenals going all the time" which is what they do, which is what causes them to grow.  if you have one adrenal enlarged then there is at least some physical anomaly to explore further and some indication it's coming from there - so it's not an entire black box.

                "Kossacks are held to a higher standard. Like Hebrew National hot dogs." - blueaardvark

                by louisev on Tue Jan 29, 2013 at 07:17:43 PM PST

                [ Parent ]

        •  Wow! (1+ / 0-)
          Recommended by:
          hazey

          This sounds exactly like the issues MrsMK is having.  She's gone through 3 endocrinologists thus far, and has had dozens and dozens of tests.  And misdiagnoses -- Addison's, Conn's, hyperaldosteronism, hypoparathyrodism.  And they still don't know what's wrong.  She gets panic attacks from time to time, twice they have been so bad she blacked out (was still functional but largely unaware of what was happening around her).  We also end up in the ER on a regular basis due to low potassium / calcium / magnesium levels.

          She had been on spironalactone in the past, but at a much lower dosage than 100mg.

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          by MKinTN on Wed Jan 30, 2013 at 06:31:32 AM PST

          [ Parent ]

    •  My experience... (2+ / 0-)
      Recommended by:
      cynndara, MKinTN

      Is that endocrinologists seem to be content with just treating people with diabetes and thyroid problems.  They seem to have only limited interest into other hormonal problems, even though that should be part of their specialization.  It's an unfortunate situation.  

      I've also come to the conclusion that most doctors are much less knowledgeable than we would like to believe.  I'm not saying they're stupid, but they're human, and they're not all geniuses either.  

      •  Unfortunately (2+ / 0-)
        Recommended by:
        MKinTN, Asak

        they are trained to regard YOU as stupid, and therefore think themselves geniuses in comparison.  It can take years to knock that perception out of their heads, or it may be impossible with the worse ones.

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